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Podcast – NIHR Evidence Dementia Collection

Health research must be informative, accessible and relevant to the public, patients, clinicians, health professionals, researchers, policy makers and health service managers. NIHR Evidence presents high quality summaries of findings so that health and care research can be used by all members of society.

In this podcast we discuss the new NIHR Evidence Dementia Collection [1].

A collection of NIHR funded research summaries created in close collaboration with those who might use them, including clinicians, commissioners, patients and the public.

In the host chair is Dr Emily Oliver [2], Lead Dementia Nurse for Portsmouth Hospitals NHS Trust and former NIHR Clinical Academic Fellow.

Emily talks with one of the researchers whose work is included in the collection, Christina Victor [3], Professor of Gerontology and Public Health from Brunel University. They are joined by Ann Pascoe [4] a dementia carer and founder / chair of Dementia Friendly Communities. The final guest comes from NIHR Evidence. Nick Spirit [5] is Stakeholder Engagement Manager for the NIHR Centre for Engagement and Dissemination, his work involved ensuring that the thoughts and views of health and care professionals, patients, carers and the public are incorporated in to every aspect of NIHR funded research dissemination, knowledge mobilisation and public involvement.


Click here to read a full transcript of this podcast

Voice Over:

Welcome to the NIHR Dementia Researcher podcast, brought to you by dementiaresearcher.nihr.ac.uk, in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

Dr Emily Oliver:

Hello, and thank you for tuning in to the Dementia Researcher podcast. I’m Dr. Emily Oliver, and having been on the podcast a few times before, I’m delighted to finally get my chance to sit in the host’s chair.

Dr Emily Oliver:

For those who haven’t read my regular blogs on the Dementia Researcher website, I’m a Registered Mental Health Nurse, and since finishing my PhD in 2019, I worked as a Consultant Admiral Nurse at Dementia UK and I’m now the Lead Nurse for Dementia at Portsmouth Hospital University NHS Trust. I’ve specialized in dementia care since qualifying and I’m really passionate about the care for older people, specifically those with dementia, and specifically in acute hospitals.

Dr Emily Oliver:

My clinical academic doctorate, funded by the NIHR, or National Institute of Health Research, and supported by the University of Southampton, explored the work system factors of the acute wards and the effect on nursing staff capacity. I’ve also participated and led on other research studies that focuses on this topic.

Dr Emily Oliver:

It is through my own research that I’ve become aware of the great work being done by the NIHR Centre for Engagement and Dissemination, and today I’m really pleased to be joined by three guests who are all instrumental in their recently published work, which brought together NIHR research on several aspects of dementia, including topics such as loneliness in people with dementia, and their carers, communication with dementia patients, and barriers in accessing dementia care. It is this report, the research within it and the work it took to collate it, that we will discuss today.

Dr Emily Oliver:

So let me introduce our three guests. Joining me today we’ve got Ann Pascoe who is the carer and founder and chair of Connecting Communities. We’ve got Christina Victor who is a Professor of Gerontology and Public Health at Brunel University London, and we also have Nick Spirit, who’s responsible for the stakeholder engagement management at the NIHR Centre for Engagement and Dissemination.

Dr Emily Oliver:

So, hello everyone and thank you for joining us today. If we just go round and have a few introductions, and Ann I’ll come to you first. Perhaps you could tell us a little bit about yourself and how you became involved with the NIHR.

Ann Pascoe:

Yes. Hello, everyone. My name is Ann Pascoe. 15 years ago we came to the Scottish Highlands to retire, and I’m still trying to retire. When Andrew, my husband, was diagnosed in 2006 with vascular dementia, of course our plans for traveling and exploring the world in our retirement came to a dead stop. I was told you have two options: “You can leave him,” which, of course, wasn’t an option, or, “You can learn to live with it.” But I chose a third route, which was to change the situation we found ourselves in. So I became a carer activist and spoke out whenever I could.

Ann Pascoe:

In 2012, I set up the first rural dementia-friendly community in Scotland, which was quite radical in those days but, interestingly, we found that in a rural setting, we had to practice social inclusion for everyone, not just for people with dementia. Over time, we’ve developed a circle of support which provides support for all older folk in our rural community, including dementia, and covers both undiagnosed, which is more prevalent, as well as diagnosed people with dementia. Plus we train all of our staff to an enhanced dementia level.

Ann Pascoe:

So I have a lot of lived experience which I’ve drawn, and when asked by the NIHR to review the dementia research for the alerts, I jumped at the chance.

Dr Emily Oliver:

Thank you, Ann. It will be so interesting to hear all about that further on today.

Dr Emily Oliver:

So next, can I go to Professor Victor? Do you mind if we call you Christina? Is that all right?

Professor Christina Victor:

Please call me Christina. Professor sounds far too grand!

Dr Emily Oliver:

Thank you very much. So, Christina, just tell us about yourself and how you got involved in this project as well.

Professor Christina Victor:

So, I’m Professor of Gerontology and Public Health at Brunel University in West London. I’ve had an interesting and diverse career, but two strands, I think, have underpinned my developing research career. One aspect is I’ve always been interested in wellbeing, whether that’s quality of life or life satisfaction, or all the different ways that we can think about it. So I’ve always been interested in that, and my principal research interest has been looking at that for older adults. So, inevitably, dementia is something that affects older adults more than the rest of the population. So my research sort of expanded into that area.

Professor Christina Victor:

Actually I’ve had a long engagement with NIHR. I was just thinking when you asked me the question, but I was the first chair of the South Central Research for Patient Benefit panel. So I think that also identifies something else that’s been really important across my career, and that is engagement with what we used to call patient and public, and the name changes, but I think for us as a researcher, for the research group I’m part of, and for the university where I work, public engagement in research is absolutely crucial.

Professor Christina Victor:

In the Royal Charter for Brunel University London, it is says, “The mission of Brunel is to do research that’s of benefit to society,” and I like to think that’s been the sort of motto that’s guided my research career, and hence the link to NIHR.

Dr Emily Oliver:

That’s great. I think we should all have that as a tagline in research, shouldn’t we?

Professor Christina Victor:

Yeah. I think it’s a great shorthand for a lot of the public institutions.

Dr Emily Oliver:

Definitely. We’ll have to write that down afterwards.

Professor Christina Victor:

Yeah.

Dr Emily Oliver:

Thank you. Thank you for being here today. Nick, can I come to you next?

Nick Spirit:

Yeah. So, hi, everyone. I’m Nick Spirit. I’m a Stakeholder Engagement Manager at the NIHR Centre for Engagement and Dissemination. My background, or my degree, was actually in microbiology and that sort of led me to develop an interest in science and research, and I suppose it led me to where I am today and my role, which is focused on helping incorporate the voices of health and care professionals, as well as patients, carers and the public, into the work that we do at the center.

Dr Emily Oliver:

Thank you. I feel very privileged to be here today with all three of you. What a great opportunity to host this. So, thank you.

Dr Emily Oliver:

So, Nick, I’m going to come to you first. So, help us set the scene, as such. So, many of our listeners are outside of the U.K. Most of them will have heard of the NIHR, but can you tell us about the Centre for Engagement and Dissemination, or CED, it might be easier to coin it as that.

Nick Spirit:

Yes. The NIHR Centre for Engagement and Dissemination, or CED, was actually launched last April 2020. So we’re coming up to our year anniversary. It incorporates the functions of two previous centers: the NIHR Dissemination Centre and NIHR INVOLVE.

Nick Spirit:

So the center itself really focuses on two key aspects. We promote the engagement and involvement of patients, carers and the public in all parts of the research journey, and we also support research dissemination and knowledge mobilization, and essentially encourage the translation of research findings into improved treatments and services.

Dr Emily Oliver:

Thank you. So, obviously this is for dementia, but actually the NIHR fund so many different research projects. So how do you decide what we should focus on?

Nick Spirit:

Yeah, it’s a good question. So I suppose it’s worth providing a bit of context to the output of the center itself. On the dissemination side of things, we have sort of three key outputs.

Nick Spirit:

We have alerts, which are short, accessible research summaries of recently NIHR funded research, and they’re presented in plain English. We have collections, which group together alerts on a specific theme or topic, and they’re really brought to life then by commentary for people who are interested in that research. And then finally we have themed reviews which are more dynamic reviews of bodies of evidence, and they’re very much focused on relevant research. So, most recently we had the long COVID themed review, and we’re currently doing one on young people and mental health.

Nick Spirit:

But in terms of selecting the research fields, because we’re obviously an NIHR center, we’re led by the priority themes, and obviously when the research is funded by the programs, we then get the tail-end of the publications coming through and we’re sort of led by those priorities, and we decide on what publications to action into alerts via their action-ability and how they can sort of implement practice.

Dr Emily Oliver:

Great. I’m sure our listeners will be really keen to know what the priorities are. So we’ll probably come back to that at the end as a key point to note. This is great that we have this in the U.K. Do you know if there’s anything similar in other countries?

Nick Spirit:

It’s a good question. I think obviously in the U.K. and abroad there’s lots of different research funders, but I think having a center which is very much focused on the two aspects of dissemination and patient and public partnerships, whether it be involvement, engagement or participation, is quite different, and I think that sort of sets it aside because those two aspects are actually really, really important, and to have a center just focused on those is quite different.

Dr Emily Oliver:

So we’re very lucky. I’m very pleased because your latest collection, or the one that you’ve worked on together, was on dementia research. So, why was that? How did that come about? That’s open to any of you to answer.

Nick Spirit:

I suppose I can sort of kick it off. I suppose it goes back to the point I made before, which is that dementia is obviously a priority theme of the NIHR.

Nick Spirit:

So, at the Centre of Engagement and Dissemination, we were seeing a lot of high quality dementia research coming through and being published. As we were developing the alerts, we were building a great selection of research summaries surrounding lots of interesting aspects of dementia, and with that we thought that the research and the alerts would really benefit from being put together as a collection and receiving commentaries from individuals for whom the research would be relevant. Ann was one of the commentators, for instance, and it was just a real opportunity for us to get insight from people who the research was for to see what they can learn from the research and how it can benefit them.

Dr Emily Oliver:

Great. On that note, this report is published now. So, who is it aimed at?

Nick Spirit:

Yeah, it’s a good question. I think the report is really for anyone who has an interest in dementia research. There are obviously specific alerts within the collection which could be of more interest to certain audiences, but I think with over half of the U.K. population, for instance, knowing someone who’s been diagnosed with research, I think the collection can really be of interest to a lot of people.

Dr Emily Oliver:

Great. What do you hope after reading it, and this is open to everybody, people will do with that knowledge and that learning that they got from that?

Professor Christina Victor:

I think one of the great things about the collection is it shows the breadth of dementia research. So, perhaps often we think of people in labs trying to find the pathways to disease and to find the cure and not think about research that looks at what’s the experience of people living with dementia and their careers. It’s going to take a wee while before we can find a cure. So, what is research telling us how we can make life better, or the best it can be, for people with dementia and their carers?

Professor Christina Victor:

So the thing I liked about this particular thing was the broad spectrum and the recognition of dementia that studied across the academic disciplines, and that’s one of the nice things about it. Every discipline can contribute to addressing a major health challenge.

Professor Christina Victor:

I think the other thing I would hope, particularly from the social science research, not necessarily the projects I’m involved in but more widely than that, is to take some of the stigma away from dementia. Dementia is not part of normal aging and it’s a health problem like we have other health problems, like heart disease or osteoporosis. We need to think about it like that, as a health issue, and not stigmatize people or their carers because we think it’s in some way just part of normal aging and should happen to everybody.

Dr Emily Oliver:

Ann, did you want to add something?

Ann Pascoe:

Yes, if I could. I think Christina’s hit the nail on the head over there because, as a carer, for me, research is absolutely crucial and, of course, we’re all sitting here waiting for a cure to be found, that the lab work has been done, and I know there’s a lot of work around drug trials and other kinds of brain research, but so often that social research is forgotten, and that’s why it was so refreshing to see all of this work being done. Because if there isn’t social research, it means we’re actually letting down dementia families and not supporting them to be able to live to our best ability and improving our lives right now.

Ann Pascoe:

When one reads, for example, those alerts, you realize that so much is going on out there and it can help us. But the key also, of course, is to get it published so that these things can be rolled out across the whole country and across the world, not just to where the research has been done.

Dr Emily Oliver:

Ann, on that note, as you said, you were a carer for your husband and you’re also very active in the community. So, things like this, what does that mean for both you as a carer and also for that community side?

Ann Pascoe:

Well, as a carer, as I say, we’re always waiting for a cure to be found but it’s not going to happen for a long time. So that social research is so, so important.

Ann Pascoe:

But an interesting thing I also think is that there’s so many communities, rural and urban, not only in the U.K. but all around the world. I think we’ve actually done work with communities in Australia, in Canada, in the U.S., and they support thousands of people with dementia. So you actually have these lived experience communities that researchers can lock into.

Ann Pascoe:

I just think it would be incredible if that work could be harnessed and the different models be properly researched, but, more importantly, evaluated so that the outcomes can be measured and appraised to see if they’re working or not. Because so often research is done, we’ve seen research is done, and you always have to have outputs and outcomes, and you have the outcomes but nobody comes back to see if they’re actually working, and that is… I think that’s important, to find out whether this can be done.

Dr Emily Oliver:

Really important. Obviously, Ann, you were part of this process. Was that in your carer role or in your community role? How did you get involved, and how important is it to involve people that have got that lived experience in processes like this?

Ann Pascoe:

I think it’s key because the difficulty is, as a carer, you’re always so tired and you always have all these other commitments, and it’s so hard to get carers to actually open up and do it. But if you can get across to carers that the knowledge they have in their head is precious, and if researchers could access that… Now, how did I get involved? I actually don’t know. Nick might be able to… I don’t know how he found me, but he found me and asked me.

Ann Pascoe:

As I say, being a carer activist, I realized a long time ago that the only way you’re ever going to get any support or get any further in this dementia world, or make change, is to actually speak about it, speak out about it. Nick found me and I spoke out about it.

Dr Emily Oliver:

Nick, do you want to follow on from that then? How did you find Ann? Also, how can other people get involved if they’d like to?

Nick Spirit:

Yeah. So, as part of the process for collections, at the moment at least, once we start building a selection of alerts around a similar topic or theme, it’s really trying to identify people who would be interested in it and people for whom the research would be relevant. So I think it might have actually been Google search that I found Ann. I think it was through that way.

Nick Spirit:

I think the collection as a whole is really, as Christina alluded to, it’s so useful in bringing together different aspects of dementia research because it is such a big and important space. But I think it also really highlights the importance of hearing from many different quarters in order to ensure dementia research and practice is heading in the right direction for those most affected by it.

Nick Spirit:

I’ve really enjoyed learning from people like Ann who can share such important experience and insight, which can then really make a difference later on in research. I think for this collection, by getting a bit of that insight, and getting a bit of that experience alongside the research, is really great and I’m hoping that it will spark discussion and spark conversation, which is so important to then making sure the research in the field can progress and make a difference.

Dr Emily Oliver:

Essential, isn’t it, to have people like you with us, Ann. So let’s talk about the research itself then within the report. So, Christina, I’ll come to you first because although you’re involved the sort of collaborative pulling together of it, actually some of your research was included in the review. Is that right?

Professor Christina Victor:

Yes.

Dr Emily Oliver:

Do you want to talk a bit more about that?

Professor Christina Victor:

Oh, dear! Always dangerous to ask an academic to talk about their pet subject! So, the two papers that link to the project I’m involved in, which is called the IDEAL project, which is run out of the University of Exeter and is led by Professor Linda Clare, and has been funded by NIHR, ESRC, Alzheimer’s Society, and we’re grateful for the support of particularly NIHR and ESRC to get us going, the focus… IDEAL is not a… we didn’t just call it that. It actually stands for Improving Experience of Dementia and Enhancing Active Life.

Professor Christina Victor:

So our group is very much focused on living well, what are the factors that help people to live well, and as part of that, I have a particular interest in social connection. So I’m particularly interested in loneliness and isolation. In our project we’ve got measures of both. So I had the opportunity to look at loneliness amongst people with dementia and their carers, and also social isolation, and to look at whether it was better or worse than the general population, and differences between people with dementia and caregivers.

Professor Christina Victor:

We know social connections are important for wellbeing. I’m not so seduced by the idea about being interested in loneliness because it has larger chances of killing you than smoking. I think we should be interested in loneliness and isolation because, as I think COVID has showed us, social connections are key to living well, whether you’re young, you’re old, you’ve got dementia, you’ve got other diseases. So, for me, it was an opportunity to look at my pet subject in a really important group.

Dr Emily Oliver:

Actually, I think you’re right. We knew how important social contact is but this year has highlighted it, hasn’t it?

Professor Christina Victor:

Yeah.

Dr Emily Oliver:

And specifically for people with dementia and their carers, we know how isolated they’ve been. A lot of social support services have not been open. So important. Thank you. So, Ann-

Ann Pascoe:

Do you know what broke my heart during all of this, is that I kept thinking of these people with dementia in care homes. I’ve seen how my husband, in a support system here at home, and he was so confused, he didn’t know why people wouldn’t come and visit us. He didn’t understand why we couldn’t go out. He didn’t understand why I wouldn’t let people into the house. He’s quite gregarious, he loves to talk to all sorts of people. But at least I was able to explain to him, and because we were shielding together, he didn’t lose me. Now, if he had lost me as well, if he had been in a care home… This is where it really came home to us, I think, the people with dementia living in these care homes alone and suddenly everything was cut off. Terrible. Just terrible.

Dr Emily Oliver:

It really is. In this collection there is research on care homes included, isn’t there?

Professor Christina Victor:

Care homes are extraordinarily interesting but rather difficult places to study. So, when I first started my career, care homes were, essentially, publicly funded. It was very much easier to get access to do research in those settings than it is now.

Professor Christina Victor:

I think they are very interesting because they are often very cut off from society. So they’re not part of the local community, and particularly with COVID, that sense of distance, dislocation from the wider social world, I think, is quite problematic. Something that I’m quite interested in is, again, how you maintain social connections when you’re frail and perhaps have cognitive challenges that don’t make social engagement easy. Think what it was like in COVID with trying to learn new technologies.

Professor Christina Victor:

One of the things I’m very interested in in care homes, although you may want to edit it out because it may seem rather weird, is touch. So I think the other thing COVID has [inaudible 00:22:56] to us is not just social relationships but actually the physicality. So if you think, if you’re in a care home all the time, perhaps you only get touched once a week when your daughter comes to visit you. All the rest of the time you get touched because people are doing things to you. You’re a nurse, you know about therapy, you touch.

Professor Christina Victor:

We try very hard to make care homes good, and it’s an observation, not a criticism of the people who work in them, but it is problematic to maintain the social health of the community, I think.

Dr Emily Oliver:

Definitely. There are so many areas that we still need to research, aren’t there?

Professor Christina Victor:

Yeah.

Dr Emily Oliver:

We need further research. Absolutely.

Dr Emily Oliver:

Nick, out of all the collection, we know we’ve got that loneliness piece, there was a bit on care homes, what really stuck out for you within the collection and something you think others should know?

Nick Spirit:

I think, for me, the collection was really interesting because a lot of the research was obviously focused on the carer side of things and, as we were saying before, the social science of dementia research is such an important area that always needs more and more research done on it.

Nick Spirit:

I think it’s interesting about the care home research as well because I think care homes themselves, in order to improve, I think there has to be research to really acknowledge the difficulties that the care homes face in trying to implement research. I definitely see that research coming through now, and I think it will be a future collection where we can really focus on care home research.

Nick Spirit:

The collection on dementia really, really stood out to me because of the focus on carers, and I think having the commentaries is really important to then help us get a better insight of how the research benefits them and what further needs to be done to help that process.

Dr Emily Oliver:

Ann, having seen the collection as well, obviously as a carer yourself, were there any parts of it that really stuck out to you?

Ann Pascoe:

Yes. When Nick sent them to me, I think, Nick, there were 15 in all. There were 15 pieces of research. I probably could have answered all of them because they really [inaudible 00:25:18]. But the ones that really interested me were around social, around loneliness and isolation, around carers.

Ann Pascoe:

But two others areas. One definitely around training. I think training is so important. Again, I said earlier, training outcomes should be evaluated and measured, and then not just stop as a piece of research but then put out so that other people can be trained. For example, one of the training that we were reading about, there were issues around cost to implement this training, and I thought, “Why can’t it go online?” We’ve had to put all our training online now. Why can’t it go online? And then even us up here in the Scottish Highlands in the middle of nowhere, we could access that training, and it would be so valuable.

Ann Pascoe:

I also think not only for people, trained carers [inaudible 00:26:22] only training for professionals, but carers need training, and we don’t know it. When Andrew was first diagnosed, I was so bewildered. I didn’t know which way to turn. I actually went back to university and got a masters in dementia because I thought, “I’ve got to learn about what I’m having to deal with here.” I also got a Churchill Fellowship and I went to India to learn about carer stress and stuff like this. So I was lucky to be able to do those things, and most carers, I suppose, couldn’t. But if all the research around training was actually made easily available and user-friendly, there would be such a huge uptake, not only for professionals but carers as well. I think that’s very important.

Ann Pascoe:

The other piece of research that really interested me was also the working, the carers working or not. I actually found when I stopped working a year ago… because of COVID we were shielding. So I also stopped going to meetings and having to travel to meetings, et cetera. I found by being home alone all the [inaudible 00:27:26] home alone but home here with Andrew, just the two of us alone, I think in my mind I became a worse carer because I didn’t have that outside interest and I couldn’t get out, I wasn’t getting out. Now he was cock-a-hoop because I was home all the time. So he was actually thrilled that I was home and [inaudible 00:27:45]. I’m here all the time. But I have to say that it made my caring life very much more difficult.

Ann Pascoe:

So I actually think whether a carer gets out to do a job, as many carers have to actually, I suppose, support families, or in my case where one can go off and do community work and put your knowledge back into the community, I think getting out those few hours every day actually gives you sanity to be able to come back into this dementia world again and deal with it. [inaudible 00:28:12]

Dr Emily Oliver:

I think you’ve just outlined there another bit of research that we can do. I hope somebody is jotting these down because actually there is so much more. But there is also a lot that’s already been done, and one of the challenges that researchers, and me myself, I found this a challenge, is when we do the research and we get these outcomes, actually turning that into something usable or something that means something in practice so that we can support people like you, Ann, and people that are caring for or living with dementia… So, any advice on how we get better at this, in research in general, but particularly dementia research, of implementing those findings into practice? Christina, I’ll start with you.

Professor Christina Victor:

Oh, thank you. You’ll start with the academic who never implements anything!

Dr Emily Oliver:

I’m sure you do!

Professor Christina Victor:

Perhaps I might be a bit more expansive in interpreting your question. I think some of the things we can do as researchers is challenge myths and stereotypes. That’s the first thing that I think we can do, to say not just that dementia is a disease but people with dementia show variation in terms of their material health and other social resources, and that can affect outcomes.

Professor Christina Victor:

So I think a really important lesson from dementia research is that people with dementia aren’t a big, homogenous lump; they show the same axes of social differentiation as the rest of us. So I think that’s an important thing.

Professor Christina Victor:

For me, even perhaps in the kind of work we do, what we’re contributing to is identifying that people with dementia are individuals with a biography and a history, and I think although perhaps our kind of work is not directly influenced, we’re contributing to notions around personalized care, but actually you need to think about the individual and not put them in a box, as, “This is a person with dementia.” This is a person with dementia who may be from a very privileged background or a less privileged background, has a supportive family, doesn’t have a family. So I think a lot of the kind of research that we’re doing is at that first stage, before we’re developing interventions. We need to sort of scope out the landscape.

Professor Christina Victor:

I’m going to answer the question that you were asking my colleagues earlier. I think one of the things that the collection does is not just look at what it’s like to have dementia now but thinking about, what are people with dementia going to look like in 20 years’ time? I was really pleased that the collection picked up a paper from black and minority ethnic groups because at the moment 5% of people with dementia come from minority communities, but in 10 years’ time, that’s going to look very different and we need to think about how we’re going to care for those kinds of groups.

Professor Christina Victor:

So that’s a partial answer to your question. I think the other way that people like myself… So we weren’t a program grant, we weren’t developing interventions. We’re trying to understand what gives purpose, meaning and quality to people’s lives, is the involvement of people with dementia and their carers. Our project, we’ve been extraordinarily fortunate to have been supported by a group called the ALWAYS group, who are a group of people with dementia and carers who’ve been with us right from when we wrote the first application in 2014.

Professor Christina Victor:

As we’re doing our research, we’re constantly involving them in terms of the questions to ask, but also, when we’ve got the results, what does it mean, and then how can we take that to people like the Alzheimer’s Society and help them develop policy and practice around, let’s say for example, loneliness and isolation.

Professor Christina Victor:

I’m not sure I’ve entirely answered the question, but I think it’s engagement with the community that you’re working with, but also engagement with the people who are going to use your findings, so the Alzheimer’s Society. Our group, Professor Clare and group, we’ve been to the all-party parliamentary group on dementia, we talk to the Alzheimer’s Society. So I think it’s a constant conversation.

Dr Emily Oliver:

Mm-hmm (affirmative). What you’re saying really resonates with me as a clinical academic. So when I was doing the PhD, I was working in the place that I was able to research, and actually that was so beneficial because I could see the issues or concerns in practice and work on those and bring those back. So I think the importance of, like you said, that lived experience, knowing what the areas that are needed on the ground, is so beneficial.

Professor Christina Victor:

One of the things we’ve done in our project when we… And do go to the IDEAL website. That’s https://www.idealproject.org.uk/, I think. You can find us. One of the things we’ve done is, when we’ve published papers, we write a lay summary and involve our people with dementia and carers and try to… so that those are all there.

Professor Christina Victor:

So we’re privileged to be funded by the taxpayer and people who support the Alzheimer’s Society. As a group, a core value for us is giving back to the people who support us. We can’t talk to every family with dementia in the country, but we can try and make our research available in accessible formats so that people can benefit and help us to develop it further. We’re only one part of the dementia research community and we take advice from those who are experts in different areas as well.

Dr Emily Oliver:

Thank you. Nick, I’ll come to you then about dissemination and turning findings into practice. How does the CED play a role in that, or what can we do to make that better?

Nick Spirit:

Yeah. I think it’s such an interesting conversation and I think, to echo what yourself and Christina have said, it’s so important making sure that you have that engagement and involvement with the end-users. As Christina said, there’s no point in doing an intervention if you don’t have an idea of who it’s for and how it can work, and that’s why lived experience and insight is so important in that respect.

Nick Spirit:

I think as well there’s the thinking of, “Okay, once my research is published, then is that it?” That’s definitely not the case. Thinking past just a publication in a journal is so important, and that’s sort of where, I suppose, dissemination and knowledge mobilization kicks in. To really be thinking of those aspects as a researcher is really important and I suppose that’s part of our aim at the center, is to get researchers thinking about, “Okay, what’s next? How do we make a difference? How do we ensure that the people who we’re essentially doing this research for can actually use it and benefit from it?”

Nick Spirit:

I think having conversations like we’re having now on the podcast, just talking about research, it doesn’t have to be a massive step but it’s one of those stepping stones, and just speaking about what could be good research in the future, or what’s helping with implementation at the moment, I think is really helpful.

Dr Emily Oliver:

Thank you. Ann, did you want to say something?

Ann Pascoe:

Yes. From a community perspective, we’ve always fulfilled needs. It’s always been the community that’s come to us and said, “We want this. We need this,” whether it be something around isolation, around loneliness. In fact, a new project that we’re looking at now is around mental health issues as a result of COVID. The community comes to us and tells you what they need, and then we start trying to do something about it.

Ann Pascoe:

So I’d say from a community perspective, to do social research, all you have to do is go and find one of your local communities in your area. See what they’re doing, follow up on their outcomes, and assess whether or not they’re working but then, more importantly, publish it so that other successful models can be replicated all over so that we don’t have to keep reinventing wheels.

Ann Pascoe:

From a carer perspective, it’s really just speak to dementia families and learn from lived experience. If we’ve time, I have a story about that. My husband was a keen photographer before his diagnosis, and after his diagnosis he tried to paint some of these photographs and, of course, I went into wife mode and I said, “Darling, those are awful. Stick to your photography. Don’t try painting.”

Ann Pascoe:

Well, to my horror, I went back to uni and one of the modules I was doing was around creative work, and I learned that while the short-term memory and then long-term memory are the first things to go, the last ones are creativity and imagination. I didn’t know that. So, of course, I thought, “Oh, my goodness. I’ve messed up again, as a carer.”

Ann Pascoe:

So I went back and I said to Andrew, “Darling, why don’t you try painting one of your pictures?” I must say, quick as a wind he came back to me and said, “You’ve told me I’m rubbish.” But we persevered and today Andrew’s art is the single key concept that gets him up in the morning. It keeps him going every part of the day. It’s kept him going through COVID this last year. It’s kept me going. In fact, it’s become an obsession of his, but a wonderful obsession, because his art is something quite extraordinary to behold. Maybe stories like that can be inspiration for other people with dementia to follow.

Ann Pascoe:

When you go and try and get money to get other people for them to get art into a community, they want proven research: “How do we know art works?” Well, from a lived experience point of view, our family couldn’t exist now without Andrew doing this. He was never an artist. [inaudible 00:38:45] but he was never an artist. The same is around art, music, dance, all these social areas that we [inaudible 00:38:59]. So, more research [inaudible 00:39:01] that would be fantastic.

Dr Emily Oliver:

Yeah. I-

Ann Pascoe:

There would be lots of families who would be able to support researchers who want to do it.

Dr Emily Oliver:

Mm-hmm (affirmative). I think you’re right. Those lived experience stories like the one you’ve just told, they can be the catalyst, can’t they, for research to happen. You’ve told us your experience there and we can go away and think about how we can harness what you’ve told us and use that for research and be able to disseminate that.

Ann Pascoe:

But I’m jolly sure there’s lots of other people like that, but it’s got to somehow… I’m not the researcher, so the researchers have to gather that information and get it out there so that the people with the money can… for it to eventually become a statutory service. Wouldn’t it be incredible if all these things could be part of not just coming in cleaning and washing and doing all that stuff, but actually be the good things to give personal quality of life and good wellbeing. These could be just part of our statutory [inaudible 00:39:56].

Dr Emily Oliver:

Thank you. So we know that a lot of early career researchers are involved with the NIHR Dementia Researcher podcast and blogs. So I just want to ask you, if you were to give one bit of advice for an early career researcher, what would that be? Nick, if we start with you first.

Nick Spirit:

I think that’s a tough question to answer, but I think my advice, obviously coming from the Centre for Engagement and Dissemination, is to really obviously think about who you’re doing the research for, how it can make a difference, and make sure that you keep going with the research once it’s published and make a difference.

Dr Emily Oliver:

Thank you. Ann, shall we go to you next?

Ann Pascoe:

Yes. Every single person who’s doing research probably knows somebody who has dementia, whether it be a loved one, your own family, or whether it be on a professional basis. Ask them, speak to them: “What do you need? What would you like that would make your life better?” Usually that conversation can [inaudible 00:41:11], I think, to research projects. That’s possibly the first thing, is to find out what do people, what do families want, or what do they need.

Dr Emily Oliver:

Thank you. Christina, same question.

Professor Christina Victor:

Oh, well, difficult one to answer. I would say I think perhaps some early career researchers are put off dementia because they think it’s depressing, but I think a career in dementia research is incredibly rewarding because you meet some fantastic colleagues who are in the research community, but you also get to meet an incredible group of older people. Mostly older people, because we mustn’t forget that there is a number of people who get dementia at a younger age, which I know there’s a particular group at UCL who work with them, but that’s a different issue.

Professor Christina Victor:

It’s not depressing. It’s really rewarding, and you can really make a difference. If you don’t see yourself as an expert in dementia, there’s still a place for you because we need people who are interested in wellbeing. So there’s lots of opportunity. If you think, “Well, I’m an anthropologist. What role is there for me in dementia?”, oh, yes, there is, in about the different ways communities live. So I would say it’s a great field to work in because you’re going to meet fantastic people in every phase of your career.

Dr Emily Oliver:

Definitely. I think, actually each and every one of them would be more than happy to talk to any early career researcher if they’re wanting to get involved, aren’t they? So I think we’re also keen to get more people involved.

Professor Christina Victor:

Yeah. We have at Brunel… So it’s isn’t a group that’s particularly for dementia, but it’s the group of older adults who support aging research at Brunel. When I say, “We’re organizing a seminar to discuss a research project I’m running,” or one of my colleagues is running, they go, “Oh, yeah, that’s great,” and we get a group together.

Professor Christina Victor:

If I say to them, “We’ve got a new PhD student or a new postdoc coming. They want to talk to you about their project,” I’m overwhelmed. So my people, my reference group, really love working with new researchers, be they PhD students or early career researchers, postdocs. They really, really like working with them. I think they’ll give you so much time. People are unbelievably generous.

Dr Emily Oliver:

Thank you. I think we’ll end there because that is just such a lovely note to end on. I think we’ve touched on so many things that are important today. So not just the collection, but actually the breadth of dementia research that’s out there, the need to include the lived experience, how we improve dissemination, and actually just how we get more people involved and how we will welcome more people to be involved. So, thank you so much.

Dr Emily Oliver:

So, just so everybody remembers your names again, if they can get in touch you, so I’d just like to thank you all. So it’s Ann Pascoe, Professor Christina Victor, and Nick Spirit. Thank you.

Dr Emily Oliver:

If you haven’t already looked at this collection, you’ll find it on a link below this podcast, or visit evidence.nihr.ac.uk/collection/dementia. We have profiles on all of today’s panelists on the website, including details of their Twitter accounts. Please take a look and go to the evidence website to have a look at what they do.

Dr Emily Oliver:

Finally, please remember to like, subscribe in any app you’re listening to. Thank you for listening.

Voice Over:

Brought to you by dementiaresearcher.nihr.ac.uk, in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

END


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